This is the fall newsletter of the World Database for Pediatric and Congenital Heart Surgery (WDPCHS). This newsletter will be distributed quarterly with updates to the database. Entering the third year of the World Database, 63 hospitals are now enrolled representing 20 countries with a collective 23,230 surgeries entered. We are happy to report that one-year follow up status is known for 67 percent of our patients. Enthusiasm for the database continues to grow and centers are enrolling rapidly.
James K. Kirklin, Database Chair
James D. St. Louis, Database Vice Chair/Secretary
Marcelo B. Jatene, WSPCHS President
Christo I. Tchervenkov, WSPCHS Executive Director
Web Based Data Entry Updates
Since the launch of the World Database, five updates have been released to the system. The development team is working to continue to enhance the data entry site. We welcome all feedback and suggestions from sites and review these regularly with the database team for updates to the system.
The most recent revision is now live in the web based data entry system and the updated forms, form manual, and appendices are available on the website. The changes included in this revision are:
- Password reset for users on login screen
- Added answer option to Race list, ‘Caribbean’
- Added answer option to Race list, ‘Mixed race’
- Modified answer option on Race list, ‘Pacific Islander (Native Hawaiian)’ to remove (Native Hawaiian)
Diagnosis (Appendix B)
Diagnoses are reported on the Tier 1 and Tier 2 Surgery Forms in question 3
- Added answer option of ‘Cardiac trauma’
Pre-operative Risk Factors (Appendix F)
Pre-operative risk factors are reported on the Tier 1 Surgery Form in question 6
- Added answer option of ‘Greater than 2 hospital admission for non-cardiac infections in the last 3 months’.
- Added answer option of ‘Malnutrition: as noted by the clinician in the History & Physical’
We are finishing work to create translations of the data entry forms into languages other than English for the World Database, and expect the option to be available soon. We are actively encouraging our members and participants to consider helping us with the translation. The WBDE will be able to handle all languages, including special characters, and will include the ability to view the forms in both English and the desired language. Once a language is approved for release, we will include it as an option for all end users to switch to the new language. This will only apply to the forms – the navigation and menu options will remain in English for now.
The effort to connect the World Database and the Chinese National Congenital Heart Surgery Database is progressing. Sample files are being tested, and the administrative process to include new hospitals is being reviewed. Once completed, the volume of information in the World Database will increase greatly thanks to the efforts of the centers in China. Their professionalism and eagerness to work with the World Database is commendable, and we are excited about the friendship and ongoing relationship between the two groups.
In coming reporting cycles the Bi-Annual reports will transition from their current layout to a unique and user-friendly approach that will provide you with updated graphs and charts in addition to the tabular exhibits.
Additionally, we have begun the work to create a more modern and usable reporting platform that will provide an interactive way of looking at your data in real time. This new reporting system will provide a mechanism for you to compare your center against the aggregate in multiple ways, including advanced visualizations such as dual-axis line graphs, bubble charts, and others.
We hope that the coming reports meet your needs as we build the new reporting system, which we plan to launch in 2020, and they complement your institution’s efforts in enhancing care of patients with congenital heart disease as well as quality improvement. Here are some samples of what to expect in coming reports:
Upcoming Database Presentations and Booths
In November 2019, the World Society will host the Regional Scientific Meeting of the WSPCHS. The conference will be held November 28-29th, 2019 in Bali, Indonesia, Asia. The Database will host the 4th World Database Symposium on Friday, November 29th from 14:00-16:00. Database presentations will include:
Surgery Counts and Collective Counts
Tier 1 Surgeries: index surgeries with expanded data collection including surgery details, discharge, one year follow up, patient death
Tier 2 Surgeries: All other surgeries with minimal data collection
Surgery submission as of September 2019
- 11,402 Tier 1 surgeries
- 8,705 Tier 2 surgeries
- 3,123 Total surgeries submitted batched submission
- 23,230 Total surgeries
Interested in learning more about enrolling your hospital in the World Database, click the link below and complete the form. A database representative will reach out to you with additional information:
How can I enroll my hospital?
- Sign and return the WSPCHS Data Use Agreement and Participation Agreement.
- At least one member of the institution should be a member in good standing of the WSPCHS.
James K. Kirklin, MD
DCC Director / Database Chair
James St. Louis, MD
Database Vice Chair / Secretary